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Author
Topic: Need some help...please... (Read 14196 times)

My 23 year old little sister was just diagnosed on 10/5/07. She got married this past April and is 20 weeks pregnant with her first child (a boy). At her last doctor app. they did some routine bloodwork, and was called to come back to the clinic. She was completely shocked when our 2nd cousin (who by the way is her midwife) told her that she tested positive for HIV. They are still awaiting her husband's results. We are totally devastated and clueless. We live in an are where HIV is uncommon. To give you an idea, my sister is the first HIV positive pregnant woman ever at this clinic and our local hospital, and they handle a very high volume of patients. Therefore most people here are comletely ignorant to the disease. What does she have coming her way? How long can she live with this? Her CD4 count is 311 and they don't know her viral load yet. Please excuse my ignorance. I am trying to learn everything I can about this. That is how I cope for I feel that knowledge is power.

I'm really sorry to hear your news. It must be a huge shock to your family and, of course, especially to your sister. I'm not sure of the facts but I believe I've read somewhere that drugs administered while pregnant can cut the chance of the unborn child being infected significantly.

I was only diagnosed last week on 10/4/07, the day before your sister. I live in a city where HIV is pretty common (New York!) but of course it came as a surprise. For me mostly because I've been sexually inactive for over a year and so it was, um, unexpected because there have been no signs except for a low sex drive.

Your sister should try to find a doctor experienced in HIV-positive pregnant women. Knowledge is power. And she should also be told often that she is loved. Love is power. And finally she should be encouraged to breathe. Breath is power.

How lucky she is to have your support. In case you've not yet seen this, here's a link http://aidsinfo.nih.gov/ContentFiles/Perinatal_FS_en.pdfto some good information available from the NIH (National Institutes of Health) which you'll likely want print out to share with your sister. It deals specifically with pregnancy and HIV. This should help you to be able to communicate well with whomever she decides to be her ob/gyn and/or Infectious Diseases doctor. Hope this is helpful to both of you.

I'm sure this is a difficult time for all of you. A time of great joy now challenged by a lot of unanswered questions, in a region unaccustomed to such pregnancies. Sounds daunting, but she (and you) will get through it and plenty of other moms have done similarly and both mother/child have fared well. I'm confident you'll get more information posted here. Just give folks a couple of days to see the post.

I think this article which appeared in the January 2007 edition of POZ magazine will also be of great interest to your sister and you. It's about two HIV positive young moms who each delivered children who are HIV negative.

It will be less clinical reading at a time when she and you are being hit with all sorts of new terms and hopefully, it will be quite uplifting!

They just found out that her husband is poz. His parents keep telling them that the tests were wrong and that they were not done right. I think that will possibly make it worse on them in the long run.

Its best to remain calm and do not get in the middle of a fight. Just remember that in a year this will all be water under the bridge. You need to be there for your sister. His parents are, of course, in denial. He is, of course, HIV positive, if thats what the test indicates.

She is so ashamed, and she keeps apologizing to us. What do you suggest to keep her from feeling this way, because that hurts me so bad. I want her to hold her head high and never be ashsmed. Like I had stated earlier, we live in an area that is ignorant to this, and ahe thinks that she is a risk to all around her. She was so upset thinking that she could never kiss my 5 and 4 month daughters again. She is beating herself up so bad right now.

Sis, a terrible way to find out, and sounds like she contracted it from the person she trusted most. Forget all that for now - she needs you to love and support her. The first days are the most difficult, and the first weeks and the first months. Your sister needs your help to focus on getting to the right medical care so she can give birth to a healthy baby.

Also, have your sister get to this forum as soon as she can - there is so much goodness on this site- many of us would (literally) not be around if not for the love, support and guidance from everyone here.

She is so ashamed, and she keeps apologizing to us. What do you suggest to keep her from feeling this way, because that hurts me so bad. I want her to hold her head high and never be ashsmed. Like I had stated earlier, we live in an area that is ignorant to this, and ahe thinks that she is a risk to all around her. She was so upset thinking that she could never kiss my 5 and 4 month daughters again. She is beating herself up so bad right now.

Hi Sis, your sister must be going through a lot of emotions now and it's hard to rid of this "guilty" feeling at the early stage, and thinking that she's a burden to her family and friends. Give her time to release those emotions, and I would even suggest that when she "apologize" again you don't have to respond with a "don't be silly", etc, just keep giving her assurance that you are on her side and the family is here for her. A sense of security and knowing that there's a loving place to go is important for newly diagnosed patients of any serious diseases.

She's probably thinking that she's "infected", "conterminated", "damaged" and, if she's not very informed, she's also worried that she might pass the virus to her loved ones. She may not be in the mood now to learn, so it's even more important for you and other members of the family to catch up on the basic. If she cannot go on line, maybe you can print out the materials from this website and find a time to through with her so at least "rationally" she will come to realize that she will not be spreading the virus through daily contacts, though the psychological part may take longer.

My mother is positive, infected by her husband. It's been over a decade now and while she's very stable and healthy, she still insists to use her own set of eating uternsils, though she never has a problem hugging and kissing her only grandson. So as time passes your sister will find ways to deal with those negative feelings (gulity, shame, etc).

She is so ashamed, and she keeps apologizing to us. What do you suggest to keep her from feeling this way, because that hurts me so bad. I want her to hold her head high and never be ashsmed. Like I had stated earlier, we live in an area that is ignorant to this, and ahe thinks that she is a risk to all around her. She was so upset thinking that she could never kiss my 5 and 4 month daughters again. She is beating herself up so bad right now.

Hi Sister,

I hadn't realized you posted again. I'm sure this is doubly difficult for all concerned. First things first. Get your sister calmed, educated and through the remaining trimester+ of this pregnancy with, hopefully, a negative baby boy greeting everyone. Her husband can be in on all of this, at the same time. He probably needs a little calming, too.

The easiest, least expensive thing to do is find your medical talent locally. If you have to get medical insight from another city, can you afford literally and time-wise to do that? It may be what's warranted if your area is as backward as you say. This is important. Talk to someone at the nearest AIDS Service organization for referrals.

Focus on what everyone can do now, not what happened, who infected whom, etc. Plenty of time for that later---if it's even necessary.

There's only so much anyone can process after receiving such a diagnosis. It takes time to build a knowledge base, to stop beating one's self up, to stop worrying, etc.

Make sure she and he are getting Nutritious Meals, Plenty of Water, and Sound Sleep. Every day.

My sister, her husband, our parents, his parents, and his uncle all traveled 3.5 hours this morning to see a high risk obstetrician and an ID specialist. I pray that they tell her something to ease her mind just a little. In my heart I know everything will be okay, and I am hoping that very soon that they will feel that as well. There was no blame either way, except for her blaming herself. When her husband found out he was positive as well he told her that she couldn't blame herself because he could have gave it to her. It is so hard trying to always be the strong one. I try to keep my parents sane, and try to keep my sister smiling. It helps me in a way, because I keep myself busy doing so. At times like this you really see just how much you love your family and how wonderful family is. They are both very healthy. They have always had healthy diets, exercise daily, and they don't drink or smoke. Her husband has his own business that is doing very well so timewise and financially they can definately afford to travel to the doctors that they have found, thankfully. There are also some local doctors that that will see for any minor problems.

My sister, her husband, our parents, his parents, and his uncle all traveled 3.5 hours this morning to see a high risk obstetrician and an ID specialist.

Your sister is not on her death bed, and although I'm sure everyone here is trying to understand the implications of HIV on your sister, it can become unhealthy to have so many people accompanying her for doctor visits. She is not the first one (and unfortunately will not be the last one) to see an obstetrician and an ID doctor, don't make it more dramatic than it is, this is very important. I suggest next time there is only one person going with her, who can listen & translate back to the rest of the family.

They weren't about to tell her no when she asked them to go, and as far as her husband's family he had to see the doctor too and he wanted them there. They didn't all go in with them anyways. My mother went in with her to get a sonogram which she has always done, and then they all went shopping to get stuff for the nursery, and to get my sister some maternity clothes. I know i'm disclosing some unnecesary info, but they weren't all tagging along for reasons assumed, and I know she has a long life ahead of her.....Just saying

Thanks for the thorough update. Sounds as if you, your sister and brother-in-law are moving forward quickly and have all the resources you need. Initially, it your post read as if she and you were in more dire straits in terms of options due to location. I'm glad that's not the case!

I look forward to your post about your nephew's length and weight. That should be sometime in January?

We were pretty worried about what kind of doctor they would be able to see at first. Luckily her OB doctor told us about the one she saw today. The baby weighed 12 oz. today, and the due date is February 28. I think that once he is here and they see that he is okay then they will fell a great deal better. I hope at least.

Her husband found out today that his CD4 is 46! How is that possible when he seems fine? If hers is 311 and his 46 does that mean that he has had it longer? He is very skinny and he says he used to be more athletically built and bigger in high school, and he says he tries hard to gain weight. Could that possibly have anything to do with it? I won't dare mention my suspicion to her or the rest of the family, because I know that it wwon't help or solve anything. Just wondering.

Hi Sis, you'd find from experiences of others here that the first few CD4 counts differ from person to person, and to start low doesn't necessarily means that a person has been infected for long(er) period of time, though it can be an indicator. Thus the fact that your brother-in-law is lower can mean many things, including other possibilities such as stress, etc. So it's probably not productive at this stage to speculate on how long he's been infected based on just one CD4 count.

quote author=komnaes link=topic=16326.msg208889#msg208889 date=1192680325]Hi Sis, you'd find from experiences of others here that the first few CD4 counts differ from person to person, and to start low doesn't necessarily means that a person has been infected for long(er) period of time, though it can be an indicator. Thus the fact that your brother-in-law is lower can mean many things, including other possibilities such as stress, etc. So it's probably not productive at this stage to speculate on how long he's been infected based on just one CD4 count.[/quote]

Any reason why he seems to have no symptoms even though his numbers are that low?

Any reason why he seems to have no symptoms even though his numbers are that low?

A low CD4 count is just what it's, Sis - a low CD count - it doesn't translate to certain "symptoms". But it does mean that the person is more likely to get infected by other opportunistic infections such as PCP (so I suspect that your brother-in-law's doctor might/should already have prescribed him with some meds to prevent PCP). Again, it's his first count and his doctor will need to see at least one more (among many other things) to have a better sense of his conditions, and decide whether and what treatments should be given.

If you've not gone to the Lessons Section of this site, I suggest you do. And, on another matter entirely, I will direct you to the upper left part of your screen, where you will see an important PM from me. Please read it.

komneas is right, it's a count, and at this point it's other infections (called Opportunistic infections) that he will have to be careful about, because his immune system is weaker and less able to fight another virus or bacteria at this point. His doctor will review the numbers and generally prescribe something to help prevent catching another infection.

her sisterI just first off wanted to say I am sorry for your sisters and brother in laws recent diagnosis. I do want to say that everyone here has given good advice. I also would like to add that this is no way mean that your sister can not have a healthy baby. Please make sure she becomes educated and stays healthy for her baby.

I wish you all the health and happiness for her and your family and that precious baby soon to be here.Fran

Being positive I understand the "shame" factor. I have to keep reminding myself that this is a microbe. I didn't ask it to come and live in me. There are so many people now in this situation. Those that live with this POTENTIALLY lethal infection and end up living for many years after diagnosis. I know that staying on the appropriate meds and living a healthier life has brought my T cell count back up to a much improved level. I have to remain hopeful that there will be better medication and treatments as time goes on. This is a fairly new issue to the medical community so it requires us all to communicate with each other. Please tell your sister that there is absolutely nothing to be ashamed of. This is one of many contagions that a person can unwittingly be infected with. It is treatable.[/b][/u] Your sister is far from alone. We who are surviving are not lucky. We sought help as fast as we could and it is our salvation. I am here to help if I can.

It's been guite some time since I have been on here, but I wanted to tell how my sister and her little family are doing. Their baby boy was born by scheduled c-section on Valentines Day! He was 7 lb. 6 oz. and 19.5 inches long. He had a headful of black hair and he is perfect from head to toe. Best part is thet they got the results for his 8 week test yesterday and he had no viral load,so hopefully it stays that way. Both my sister and her husband are undetectable, and doing well.

To start off, it doesn't matter who had HIV first and how they got it. Due to the negative stigma or moral misconceptions a common question after finding out someone is HIV positive is asking how they got it. Is the same question asked from someone that has cancer? Do people ask if it was from the overexposure to cell phone waves, or carcinogens? People that do bad things get HIV. People that do good things get HIV. It's a disease and nobody deserves it. The best thing is to reinforce this with your sister and forget about trying to figure out how it happened.

Next you need to learn as much as possible. Research online, subscribe to POZ, attend AIDS walk and AIDS day events. Being informed is the best way to understand the disease, not be ashamed of it, and find ways of coping emotionally as well as knowing how to fight it. Your sister may be able to live many decades more so it's good to know the medications and many alternative methods to boost the immune system such as yoga.

The best advice I received when I found out my uncle was HIV positive was to understand what he was going through and the mental instability ahead of him. Some days he would be strong and optimistic, others he would be depressed and would want to give up. It's normal, especially with what he was going through. Our job is to listen and understand that no matter how unreasonable his lows can be that he has the right to feel that way.

I hope the best for your family. And I hope that your nephew has his parents for a long time.